Switch On – Day Zero

Posted on 19-01-2010

19Jan

Firstly, THANK YOU to everyone for your support. I really have had the most amazing messages from friends and family alike by text, on Facebook, by e-mail and comments on here. I really really appreciate it I must apologise for being so vague in the information I’ve provided so far. Especially to my closest friends and very immediate family who I know have been wanting me to fill them in – I’m sorry they will find out like this rather than personally but I hope they understand. There’s so much to say and so many thoughts running through my head, I really just had to write it all down first and there is going to be far more written down here than I could possibly fit into a text message.

So here goes…

Well.

The truth? It’s horrible. The “sounds” being registered by my brain sound awful. All I can hear is distortion, wheezy noises and muffle.

BUT it’s normal apparently. A very dear friend of mine who had her CI 5 years ago told me she smiled when she heard that I had said the above. I take this as hugely positive.

The strange thing is, I really expected nothing less than what I did get. The worst case scenario for me (other than it not working at all, but that wasn’t an option ) in my head, was that the first sounds I’d hear would be just like I’d put an hearing aid in that ear back in the days pre-op. If you’re a regular reader of my blog, or know me well personally you will know that a hearing aid in my left ear gave me a complete mixture of distortion and ringing noises and nothing else. There was no clarity in the (very little) hearing left in that ear and it was utterly unusable. My biggest fear I think, was that the distortion would not go – and the CI would just amplify it.

No matter how much I prepared myself for this, it was still a huge huge shock when it happened just like I feared. I tried very hard to make sure that I stayed calm and realistic but in reality my heart was beating fast and I suddenly became quite withdrawn in my thoughts. For some reason, I couldn’t even talk to my Mum or Andy about it and this is the first time all day that I’m telling anyone how I’m really feeling about it.

I’ll start from the beginning.

This morning I woke up, and felt quite subdued. I have no idea why. Everyone else was really excited, everyone else was messaging me with the most fantastically supportive words, everyone else was eager to know what was going to happen. I just felt a bit blank. My conclusion is that I think now that I was finally forced to accept that this appointment wouldn’t be what I wanted it to be. I’ve been very positive about the whole process so far – I still am – but I have always seen it as a long term thing. The end result at the end of the CI journey is what I’m excited about. The operation and recovery, I knew would be easy compared to this bit.

I think it all of a sudden dawned on me, just how much hard work it’s going to be. I always knew this, but chose to ignore that part up until I was forced to think about it. I believe this is why I bounced back from the operation so well, because I knew that part was the easy bit. Working hard at learning to hear again, is the part I’ve been dreading for weeks.

We arrived at HARC and I was shown into the room by two people from the Audiology team. They talked a little bit about how I was, how the operation went and how my scar was healing. This was good – this made me feel very looked after. They’re fab, the staff at HARC, full praise to them.

It was then the big moment, to put the processor on. Except the pad wouldn’t stick to my head!! Waaaah!

Two more powerful magnets later and finally it stuck. It appears my hair is quite thick – I may not be able to wear the pad over the top of my hair. What a waste of metallic purple!

Seriously, the colour is fantastic – as you may see from the picture above. I love it. The purple colour I chose actually also came with three other colours too – metallic orange, metallic royal blue and metallic jade green. I’ve also been told that if I want any of the other designs – just ask! The lovely man was rather confused as to why I might want more colours than I have (the CI came with silver, black and brown by default so I have those too) but then he probably also would not understand my bag and shoe collection either

So it’s finally in place, the pad is attached by magnet to my head and the processor is hooked behind my ear like a hearing aid is (but without the ear mould). They first had to test what levels of comfort I have for sound in that ear at the moment. This will change and I’ll tolerate much louder sounds as time goes on, but as the ear hasn’t been used in so long, it would be a big shock to my brain (think wobbly eyes!) if the processor was tuned straight to my hearing loss.

There were four or five different sounds that they slowly increased, one by one. My tinnitus was roaring away, and I mean absolutely hollering. Then, all of a sudden, I realised that the flashing symbols on the computer screen were matching some sort of staggered sounds in my head. They were in my head – not going through my ear canal like I can kind of feel with a hearing aid, but these sounds were almost like an extension of my tinnitus. Slowly, the beeps reached a volume where they were louder than the tinnitus and eventually I had to say when it was loud but still comfortable to listen to. It was weird, it was like I was having a hearing test and everything is quiet except some strange beeps but these weren’t straightforward beeps, these were dull and flat beeps.

That was just a test to get them started with the programming. Using these results, they then programmed the CI and replaced it on my ear and head and turned it on…

It wasn’t a sudden “Wow! Sound!”, it wasn’t a “Oooh, sound!”, it wasn’t even a “Hmmm, I can hear something”, it was neither here or there. It was so quiet, yet so loud. It was so noisy, yet I couldn’t hear anything.

The audiologist spoke. It was like I’d put my old hearing aid back in, I could only understand him by lip reading – there was no helpful sound to assist me. He sounded like he was on the radio, but it was really badly tuned. Absolutely nothing at all was clear. I used the term “robotic” at first, but I don’t maintain that now. It’s not robotic but it is intermittent. The sounds are almost like they are being transmitted through a mechanical device that is crackly and keeps turning itself on and off.

Mum spoke, Andy spoke, the other Audiologist spoke. I slowly noticed a difference, in that at first everyone sounded the same – but then after five minutes I could pick out tiny little accents to the noise which sounded familiar. This was a relief, I was searching hard for familiarity for comfort to help me in this strange noisy world.

The appointment finished and we made our way home. I was staring out of the window, playing with my phone, trying to adjust to the weird sounds being interpreted by my brain. All of a sudden there was a clicking sound. I looked up – we had stopped at some traffic lights. What the hell was it? It was louder than anything else. Click-click-click-click-click-click-click-click. The penny dropped – the indicator was on – the sound was like it used to be with the old analogue hearing aids back in the old days when I listened to my walkman with my hearing aids on T in the car to and from school. The indicator used to interfere with T setting and clicked at me. With the hearing aid on its own – it doesn’t click. Was the indicator interfering with the CI or was I actually hearing it? I don’t know – does a car indicator click to you?

It was probably about 2 hours after the first initial switch on, when I got fed up with it and I took it out. I went out to college. I put my hearing aid back in for my class – but I’m sure you can give me that. On the way home I gave it another go. I am determined to persevere. I was starting the same track over and over and over again in the car. It was blaring away – it’s a track I know so well (I’m not admitting which track again, just in case you’ve forgotten from yesterday and started to think I might be cool again ) and I was listening harder and harder each time. Eventually, by the time I got home, I was following the music and knew what point in the track that I was at any time and I smiled to myself – is this improvement? But I couldn’t recognise the melody – that’s still a long long way to come.

I am still being incredibly positive about this in the long run. But the switch on felt quite like an anti-climax to me. I am sure – no, I KNOW – that my blog posts over the coming weeks will get more and more positive. I just KNOW that in a couple of months I’ll be reading this and wishing I had been in possession of a time machine to see what good it will bring me in time which will help keep me going – this in turn, the faith I have in this equipment, will help keep me going I’m sure. I have all this in my head, yet I am still going to bed feeling very deflated tonight. It hasn’t improved enough over the course of the evening to give me anything to be excited about yet but I think I’ll give it a break – after all, its worked hard today and so have I.

Tomorrow will be the real test. I will wake up in the morning and I will reach over to the bedside table, past the hearing aid, and I will put the CI on. I will continue through the day using just the CI. I will make a conscious effort to listen hard, try and recognise sounds and work out what is getting better and what is not. I will make this work, I deserve it, and I owe it to everyone who has been so fabulous over the last few weeks and to myself

I have my second appointment tomorrow. I will write again, and keep you updated.

11 Responses for "Switch On – Day Zero"

Thanks for the update Bryony, as you say it is early days yet, it is a marthon not a sprint, but my heart goes out to you, like a lot of people who know no better, I thought the switch on would be like a light switch turning on, where the sound was better but just wanted fine tuning. Please stay positive I am sure it will be worth it in the end.

Wow. As positive as you might not think this was, I think you and your brain are absolutely amazing!

I guess it’s a bit like a library with a vast array of colourful and wonderful books in it. Lots of different people come in every day. The one person that used to come in and borrow the book called “hearing” went awol for a bit, and now a new person has come to borrow that book.

First of all the librarian has to remember where on earth it is – locate it, get it down off the shelves, blow the dust off, upgrade the old paper card system to a barcode system (it’s been a long time, remember ), and then give it to the person who wants to read it.

The new person can’t read the language in it and is having to learn it, like you’d learn French or German. Their accent sucks to start with, but it gets better and as things become more familiar, they can see the roots of the language being similar to English. The odd word here, the odd grammatical element there, but after a while it starts to make a bit of sense.

It will become more familiar. Of that I am sure. I look forward to reading about your ongoing journey.

I can highly recommend a book called “Emma and I” by Sheila Hocken. It’s about a lady who is blind and has a guide dog (Emma), and her life as a blind person. Spoiler alert, but at the end of the book has an operation to restore her sight, and she can’t face going out on her own as everything is too fast and confusing. So she closes her eyes and lets Emma take her out for the first time. She also catches Emma stealing the cats’ food having been getting away with it for 10 years. LOL!

Good luck. Sleep well. Looking forward to hearing about what tomorrow brings.

Oh B, I’m crying here for you, with joy, anticipation, excitement at what the future holds for you.

I’m sure as the days pass, more and more will come into focus, and in the meantime use this blog to write about your experience, so we can best support you but also so you can make sense of it all. I can’t imagine what you’re going through, the emotions are so huge for ME and that’s just from reading about your experience.

Great story. I find the concept of hearing noises through the brain quite incredible. I never heard of it before. I had heard of the implants but never realised they worked like that. I would imagine it could be quite confusing at first to hear through the brain, but I am sure given time and practise it will come as natural to you as listening through a hearing aid.

Crumbs, that sounds like SUCH hard work. I’m SO sorry the beginning wasn’t more encouraging. But you have such amazing determination, I’m SURE you will get there. I just wish it were an easier journey.

I’ve been away, and then swamped by my freezing house so haven’t managed to post, but I’ve really enjoyed reading your blog these last few weeks. Thanks for giving us all such great insight into your experience.